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Thread: Hello

  1. #1
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    Smile Hello

    Hello everyone, I've just joined today, my name is Becky and I'm here as my mum probably has bulbar MND - she hasn't been given a definite diagnosis yet but is awaiting nerve tests, and her neurologist said to me he thinks it is. She started having trouble with her speech at the beginning of 2013 and it's gradually got worse, now she has to force some words out, the top part of her oesophagus isn't working so she has to be careful not to choke. It took so long to get to see the neurologist and I chased all the way, and now he has told me what he thinks (in April I found out) I don't know what to do and I don't want to chase any more appointments. I haven't told mum or dad and they seem clueless, mum keeps saying if they find out what nerve it is I will get better, and maybe it's my ears or my teeth, I don't know whether it's best they know or not, probably not I think?? I have two young children and work full time, mum has had them 3 days a week since they were tiny and they are her whole world, I'm so fearful of what the future will bring and feel so sad for her, and everyone with this. Please excuse the long ramble, and apologies if this post is in the wrong place xxx

  2. #2
    Forum Member john's Avatar
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    Hi Becky,
    Welcome to the club. Hope Mum is right and they find a different cause and can cure her problem. If not you are in the best place for help ,support or just conversations with people who know all too well your problems.
    Tricky times but you will cope and Mum and Dad will adjust as things progress.

    John

  3. #3
    Forum Member Cookewitch's Avatar
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    Like John I hope your mum is right and it's not MND but if it is then there is plenty of support, advice and ideas on here to help you plan and cope x

  4. #4
    Forum Member Terry's Avatar
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    Welcome Becky;

    Hope you are a temporary member and your mum has something else. The EMG should be the last test and then you will know. You are in a good place for support and helpful information so keep posting any concerns.

    Best wishes, Terry

  5. #5
    Forum Member pete's Avatar
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    Hi Becky,

    Yes it is a life changing diagnosis for almost everyone involved , what is odd ,is why the neuro has seen fit to discuss your moms diagnosis and not included her on his findings,as he should have . As another Bulbar patient I do know there are quite a few minor things you can do regarding the swallowing , the Speech therapist will evaluate her ability and suggest changes to help prevent the coughing and splutters ,changing the way she drinks liquids can also save the choking fits , there are several diseases that do have very similar symptoms so I hope when they complete the tests ,she turns out to have a treatable disease, so to say we are sorry you have the need to be here , we certainly mean it , but we are hear to listen and offer tips and advice that may help , fingers crossed for a good result.

    Pete

  6. #6
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    Hi Becky, as the others have said hope it's not mnd but if it is you have come to the right place. I am also surprised you were told it might be mnd , i thought they would only say if they new it was .
    My Mum has Bulbar mnd , symptoms started just over two years ago!! So I know how scared you are right now. I had been on the net looking for answers while we were waiting to find out and it sounded to me Mum had mnd , and I didn't say anything to Mum or Dad and family .
    Thinking of you , keep in touch Jackie xx

  7. #7
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    Thank you all so much for your replies. I think as mum's voice was so bad and I was dealing with the doctors constantly that's why they spoke to me - I phoned her neurologist and said could he put MND out of my mind as I had googled lots and was scared and he said "did your mum google", I said no and he said "it was the first thing that came to mind when I saw her, it is certainly on the cards that she has it", I was shocked and said "is there anything else it could be", he gave a long pause and said "slightly possibly another degenerative brain disease that is slower moving but not likely". I said "I'm not going to tell her", he said "good idea - if she had asked the question I would have told her but she didn't". I suppose that's what I get for chasing lol. It's just that she has the uncontrollable laughing and crying symptom also and I doubt he would have told me unless he was pretty sure. Terrified is the word - I was at work and spent the rest of the afternoon being sick in the loos and not getting much done whole pretending to be normal, we went on holiday the next day and I didn't tell my hubby as didn't want to ruin it for him and the kids but it was a pretty bad week inside, couldn't eat or sleep so told him when we got home. Like you say maybe it is not but either way I knew nothing about this awful illness before, so now will be fundraising for it with my runs. Thank goodness for this charity, thank you all xxxx

  8. #8
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    Hi Becky,

    I hope you get good results for your mother and that she hasn't got mnd. My husband was diagnosed with bulbar motor neuron last September and now his speech is very bad. He can still walk and do the garden and he can eat solids but liquids he has to add a thickener to otherwise he chokes. He doesn't talk about motor neuron and seems to just blot it out of his mind because he thinks he will get better. I sincerely hope things work out for the best for you and I am thinking of you everyone on this forum is so supportive.

  9. #9
    Forum Member Lycanthrope's Avatar
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    Hi Becky x sorry to hear your story. I wish you all the best and hope it's not MND. I'm new here too. My dad was recently diagnosed with MND and like you I've been in the position of knowing a lot more about MND than my family. I decided to only share what I knew if I was asked directly, otherwise I just keep quiet, unless it's something that would benefit him. The wonderful people here are a great source of help and inspiration to me. I really hope you get some good news soon regarding your mum tc xxx

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